Saturday, January 15, 2005

Breathing room

I had this dream a few nights ago. In the dream I was testing my breathing, which is the primary indicator of how soon you're gonna kick off when you have ALS. Buy the farm. Screw the pooch. Check out. Die. And in the dream my breathing was getting stronger. I filled my lungs up as far as they would go, and then, by accessing some extra set of muscles, some other gear, I was able to draw in even more air. I enjoyed that feeling, in the dream. But in reality my self-measured inhalation volume is only 4300 mL, and remains in that range despite my lungs being clear. I just tested it, now. The decline from what used to be 5000+ is indicative of nerve and muscle loss to the breathing apparatus. What are ya gonna do?

My thanks go to two friends who recommended acupuncture. It may not help, but anything that seems plausible to me and does not involve a lot of time or money, is welcome. Yoga involves a lot of time. Or, let's put it this way: Since I am not a yoga person, every moment seems like a chore to me. Now don't go tellin' me that's the exact obstacle I need to surmount in order to break on through to the other side ... I am not a yoga person. And although I am spiritual in a way that does not need explanation or justification, I am also very much not a religion person. Maybe you can say my religion is my life; I can't go to church and lock away my goodness there.

Another thing I have lost, along with running and jumping, is my ability to be funny in person. I hope I'm not one of those annoying people who tries to be funny all the time, but judging by the fact that people sometimes think I am too serious and intense, I'll assume I am not. Anyway, I often see the humor in things and often talk about what I think is funny. Or do or say things that make people laugh. A major part of good humor, I think, is the ability to keep a straight face, so that the funny part comes as a surprise to your victims. I crack people up. Sometimes. If they're smart. And not mean. These days however, the disinhibition I previously wrote about (the nervous system loses control over expression of emotion ... leading people with ALS into uncontrolled fits of laughing or crying), has taken it's toll. Often, when I have something funny to say to my wife, I start grinning and laughing so much that I can't say what I was thinking. She can't even understand me, much less fall for the joke.

I used to be a master of poker face and smooth delivery. It's not totally gone, and I still get off a good one from time to time. But it's like losing part of yourself.

Contributors

I am a husband and father of two young children. On January 13, 2004, at 41 years old, I was diagnosed with a 100-percent fatal, presently incurable disorder called ALS. If you know me in real life, and I didn't personally invite you to read this blog, please send me an email about reading this blog.